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People asked me how old my son Jackson was, expecting me to say 2. When I’d tell them he was five years old, either a flicker of shock passed over them or they’d just explode in one burst of disbelief. “Really?!?” this woman at the playground exclaimed. Then she pointed out her son who was towering over mine in the sandbox. “My son’s only 3!” Then, as I did almost every day, I’d say “Yes, Jackson is very small for his age.”

The issue of his size first came up when I was six months pregnant. “You’re measuring small,” said the midwife. I’m going to have you get a second sonogram to just make sure he’s okay.” A few weeks later as my husband and I gazed up at the video monitor, watching the bones and organs of our child, floating indecipherably on the screen. The doctor told us that our baby was on the small end of normal.

By about month eight, even strangers treated my “showing small” as a matter of alarm rather than luck. One day a woman asked me how many months I was. A week away from my delivery date, I told her.

She raised her brows. “What are you doing? Starving that baby?”

A few weeks after this encounter, Jackson was born. Holding my tiny and by all accounts healthy baby boy made all the worries about his size melt away.

But size came up again at his four-month wellness visit. “His head is small.” The doctor said, “not growing as I’d want it to. But don’t worry, we’ll just track it.”

I know pediatricians say this “don’t worry, we’ll just track it” thing to parents all the time. This does not work for me. Track it? Track what? I felt light headed and woozy, unable to ask any coherent questions. I got home and googled “infant” “small” and “head.” A burst of information of what it could all mean unfurled before me. The word “microcephaly”, which literally means small brain, littered the page. I read the description of this disorder. A parade of images flashed in my head - the comic strip character Zippy, frantically chattering “pin heads” in the movie “Freaks” and then back again to Jackson curled up in his crib.

That night sitting up in bed, feeling wildly dislocated, I peered at Jackson’s tiny sleeping body in the bassinet, the word “microcephaly” looped over and over in my head.

We took him to a neurologist. “He’s totally normal” the doctor said. “Just small.”

But at our next visit our pediatrician paused over his head circumference and suggested he get an MRI, just in case.

At the Radiologists, we were ushered into a pink room “Put him there.” the technician pointed. When we complied, she lowered the machine and told us to hold him still while she put clamps around his skull. We held his little body as he writhed, screaming. A few days later we got the results. Again, normal.

“Oh that’s good,” the pediatrician said, “it’s just familial microcephaly.”

That word again.

“But isn’t that bad?”

“No, not necessarily. It just means his head his small.”


Never mind.

As Jackson entered toddlerhood, my concerns diminished. I could see what an exuberant, bright and active little boy he was becoming. But his size haunted me. I dreaded our doctor’s appointments where she said things like “He’s small but call me if he starts having seizures or his development starts to reverse.”

I switched doctors. The new doctor I took him to just shy of his second birthday plotted Jackson’s off the charts smallness but was reassuring. “Just looking at him,” he told us, “you can see he’s a healthy strong little guy.”

Then, he brought in one of the senior doctors from the practice.

“Weight wise - he’s in the fifth percentile...” she said.

I thought, that’s not so bad at least, at nearly two years old; he’s in a percentile. But then she finished her sentence, “...For a 10 month old.”

After the senior doctor left, our new pediatrician tried to reassure us. “He’s just small. But maybe we can do something about that before he gets into first grade. You know, that’s when kids are so cruel. ….”

By this point I had stopped listening. I was expecting him to say something like: we better address his smallness because it could affect, I don’t know, his liver or something. But all my critical capacities didn’t stand a chance against the heart-wrenching proposition that my beloved baby bird would be taunted and bullied and that there was some medical way of staving that off. This is the shifting ground on which I constantly found myself. Could his smallness be a symptom of something serious? A life threatening disease? A chronic condition? Or was his size itself the disorder, something we should address whether or not it affected his overall health or was it just a cosmetic defect we could correct?

The doctor handed me the referral to make an appointment with the GI specialist. He told me not to worry about the diagnosis he’d written on the form. “It’s just for your insurance company,” he said casually.

As I stood at the elevator, I looked down at the page and read “Failure to thrive.” Every organ in my body tightened. That night I got a migraine.

On our visit to the GI Specialist, Jackson began to dissolve as soon as the doctor walked in. She began her interrogation. “Was is it a normal pregnancy? Did you carry him full term? “ Did you breastfeed?” “Until when?” “How often?” “How much does he eat per meal?” My voice faded with each response. She looked at his chart, and then looked into my saucer like eyes with her’s ferociously narrowed. “Why didn’t your pediatrician send him here sooner?” she asked.

“I don’t know,”was all I could muster.

She told us we needed to do a full work up. “We might have to tube feed him,” she announced, as she wrote orders for more tests.

Tube feed him? I didn’t even know what that meant.

Our next stop was to a nutritionist who was supposed to help us prepare foods that would fatten him up.

“Have you ever heard of Dunkables?” she asked as she wrote a list of high calorie foods on a prescription pad. She told us to give him, a thick, sweet high calorie canned drink called Pediasure that cost us about $150 per month.

Over the next months we spent hours and hours in waiting rooms so he could get tested by an endocrinologist, get a sweat test (for cystic fibrosis), get more blood tests, get a stool analysis, get an x ray of his wrist. All of the tests came out normal.

Finally, we decided to put an end to the medical odyssey left with what we’ve known all along. He is small.

We’d spent countless hours in waiting rooms with children suffering catastrophic disabilities, waiting to be told by specialist after specialist, with varying degrees of alarm or nonchalance “yep, he sure is small”

And even though his smallness had been so front and center for me and my husband, ordinary people remark on Jackson’s other traits more than his size. At his preschool, other parents were always telling me how much their kids love Jackson – or “Action Jackson” as he is known by his schoolmates and teachers. “He has a huge personality,” one mom told me, “just look at him. He’s like a little rock star.”

But still, watching his friends tower over him or hearing them remark on his size in that frank way children declare things is like getting punched. I can feel in my solar plexus all the hurt and cruelty that will come his way just because he’s a human being in this world and my helplessness in the face of it. That’s what this whole small thing has become, a vessel for graver fears – the visceral yearning to protect this being from even the slightest hurt and the knowledge that really, when it comes right down to it, you can’t. You can’t save them. You can bear witness, love, support, advise; but your child will be hurt. Your child will learn the hard way. Your child will have to make their own path.

There are moments when I lie in bed and wish I’d never had children. This love feels so messy and fraught. Its nothing like the misty, blissful images I invoked in my early 30s when, single and living in a group house, I felt that time was running out.

One Easter Sunday around that time, my aunt and I smoked cigarettes on the stairs behind

my parent’s house after a family brunch. In the distance, two back yards away, on the other side of the block, a trio of little girls in starchy white and yellow dresses swooped in circles, arms out stretched on a green lawn, while a group of adults laughed and talked on a terrace behind them.

My aunt gazed at the little tableau and took a long drag from her cigarette. “That’s my ideal.” she said, “that’s exactly the life I wanted.”

Never in my life had I felt so bleak. The little back yard scene pressed against me. I couldn’t imagine ever feeling the ease, the lightness it seemed to embody. Everything felt gray and heavy with disappointment and regret. It was like the adults we spied through the trees were frozen in time exactly where they should be. I looked at them and wanted to be where I imagined they were - safely ensconced after the end of a long journey, instead of where I was: alone, once again, at a family function, furtively smoking cigarettes on the back porch. I couldn’t imagine it ever being any different.

I wonder if someone with such a longing has spied me and my kids through the trees. I wonder if they’ve imagined me, like I did that family one Easter, seemingly ensconced in this cliché of domestic bliss.

I know now that having children is not an arrival and that there are no maps or guidebooks to prepare you for those desolate moments when you can’t, for the life of you, figure out where you are, much less how you’re supposed to get to where you want to go. Those parents sipping lemonade (or was it actually gin?) while their children swirled about them? They were taking a breath.

And this is when I have to remind myself of a central fact of parenthood: Your child is not your traveling partner on that great voyage that began when he or she burst into your life. Your paths may intersect, run parallel, go in opposite directions, twist and turn around one another but you’re on different journeys.

At the park, I thought about this as I watched my son run through the grass as fast as he could. I’d be totally bowled over by the force of his delight. I could feel my heart contract and expand, and, just as in those early days when I crept into his room to watch him sleep, it was as though the universe was breathing with me. I’d open my arms wide as he’d run toward me. His wiry little body fell into me, I’d hold him tight and all those roiling worries over the things I wish I could control would float away. I’d close my eyes. I’d feel the universe holding us there in that pause. I’d let go and off he’d run, throwing a stick to the dog, pointing at a bird’s nest, rolling joyously down the hill. My tiny beautiful boy.

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